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How important is bedside manner to a patient’s well-being? Does taking the time for a personal connection really pay off in greater healing?

Join us as we speak with Julie Rosen, director of the Kenneth B. Schwartz Center about their efforts to promote more compassionate care by health care professionals. You’ll learn about coursework the Center has developed for doctors, nurses and other health caregivers, why they think that the bond between patients and healthcare workers is vital to healing, and how they are rewarding and recognizing those who offer compassionate care. Plus, you’ll find out how to seek out and nurture your own thoughtful and supportive healthcare team.

As always, our guests answer questions from the audience.

Announcer:

The opinions expressed on this webcast are solely the views of our guests. They are not necessarily the views of HealthTalk, our sponsors or any outside organization. And, as always, please consult your own physician for the medical advice most appropriate for you.

Judy Foreman:

Hello and welcome to Health Now. I'm your host, Judy Foreman. How important is bedside manner to a patient's well being? Does taking the time for a personal connection really pay off in greater healing? Tonight we'll talk about what compassionate healthcare is and how it affects patients and healthcare providers.

Now I would like to welcome Julie Rosen. She is the executive director of the Kenneth B. Schwartz Center. The Schwartz Center is an organization dedicated to strengthening the relationship between clinical caregivers and patients. Julie Rosen also writes the Bedside Manner blog for EverydayHealth.com.

Julie Rosen, thank you so much for joining us.

Ms. Julie Rosen:

Thank you, Judy.

Judy:

Sure. I am also pleased to welcome Dr. Beth Lown. She is an assistant professor of medicine at Harvard Medical School and an internist at Mount Auburn Hospital in Cambridge, Massachusetts. She is also a member of the board of directors of the Kenneth B. Schwartz Center.

Dr. Beth Lown, welcome to Health Now.

Dr. Beth Lown:

Thank you, Judy. It's nice to be here.

Judy:

Great. Well, I would like to jump right in and start by asking both of you, Julie Rosen and Dr. Beth Lown, how you would define compassionate care. Julie, let's start with you. How would you define compassionate care?

Ms. Rosen:

Sure. I would define compassionate care as a caregiver who treats their patients with sensitivity and empathy, who has respect for and cares for the patient as an individual and also for the patient's family, who has the ability to understand the patient's medical and emotional needs, who is able to be present with the patient especially in times of crisis, and who has outstanding listening, communication and interpersonal skills. That is how I would define compassionate healthcare.

Judy:

Okay. Dr. Beth Lown, it's probably impossible to add to that, but do you have anything to add?

Dr. Lown:

Well, I think I would just emphasize what Julie said about presence. You know, as clinicians we are so trained to rush in and do things to people, but I think that compassionate care really happens when the patient feels deeply known, that they are understood by providers who treat when they can, but who are also willing to be present, to be truly present and to support the patient throughout the course of illness and through suffering.

Judy:

Well, can you do that in a seven minute visit or whatever the average visit is these days, Dr. Lown? I mean, that seems like a contradiction in the way the health system is set up.

Dr. Lown:

Well, I wouldn't disagree with you. I think our visits are short. They are brief, but in the States, believe it or not, they are still on average about 20 minutes as compared with 10 minutes in Europe and the United Kingdom. But the real answer to your question is I think we need to take the time that we need to take when a patient is in need.

Judy:

Yeah.

Dr. Lown:

And there is a lot to be said about sitting, about attentive listening.

Judy:

I am struck by the whole sitting thing. I have spent a lot of time with various patients in hospitals, and doctors who never sit down just convey the idea that they are in a rush and don't have time to talk.

Dr. Lown:

Well, you are right. That's absolutely right. And if you take just – it takes a second to sit down, to empty your mind of all the millions of things you have to do and all the patients that you have to care for and all the tasks that are waiting, and you empty your mind, and you focus your attention intensely on that person who is sitting with you. That doesn't take that much time, but it is perceived and felt and experienced as true presence, and that's irreplaceable.

Judy:

Yeah. I totally agree with you.

Ms. Rosen:

I want to add to what Dr. Lown just said.

Judy:

Sure.

Ms. Rosen:

For a doctor who sees patients day to day, seeing patients is routine – but for a patient, it's never routine.

Dr. Lown:

That's right.

Ms. Rosen:

When you go in for a medical procedure, if you have a chronic illness, it's never routine. And, you know, the emphasis of our work is really to help clinicians be more compassionate. It's really to stay, as Dr. Lown said, in the moment with that patient.

Judy:

Yeah. Well, I want to get into that a little more in a second, but, Julie Rosen, I would like you to first give us a little short history of the Schwartz Center. Where is it physically, and what do you do? Our Boston listeners have heard this story, but many other listeners haven't. Who was Ken Schwartz, and what is the Center?

Ms. Rosen:

Sure. Well, Ken Schwartz was a 40 year old man. He was a healthcare attorney in Boston. He was also a husband, a young father, a son, a brother, a friend and colleague to literally hundreds of people. He was really an extraordinary man. When he was 40, he was diagnosed with lung cancer. He was a nonsmoker. And he wrote an article that was published in the Boston Globe magazine that talked about his extraordinary experience in the healthcare system. He was treated at Massachusetts General Hospital, and while he was very, very sick and ultimately did not have a good healthcare outcome – he died, in fact – he had an incredible human and humane experience. And this article is on our Web site, which is theschwartzcenter.org, and is available. We send this to medical schools and nursing schools across the country. It talks about why his experience was punctuated by moments of exquisite compassion and empathy, and why that is so important to the healthcare experience.

So just a little bit about the Schwartz Center. When Ken died, his friends, family and caregivers came together to start the organization.

Judy:

And when was that?

Ms. Rosen:

That was in 1996, so we've actually been in existence for 13 years. The focus of the organization is to strengthen the relationship between patients and caregivers and provide support, education, and training to caregivers to help them provide compassionate healthcare. We also – some of our programs focus directly on patients, but most of the programs that we have help clinicians be more compassionate and empathetic and thereby help patients. We are at the Mass. General Hospital, and we have stayed at the Mass General, but our programs are really nationwide at this point.

Judy:

And so what are the projects that the Schwartz Center does?

Ms. Rosen:

We have a number of projects, but our key signature program is called the Schwartz Center Rounds. And this is a program that's now in about 150 sites, mostly hospitals, but we also have the Rounds in nursing homes and community health centers. And the purpose of these Rounds is at each of the institutions – and these are in 27 states now across the country in academic medical centers and small community hospitals and cities and really every different type of hospital setting.

The purpose of these Rounds is to bring a large group of multidisciplinary caregivers together once a month at each of these sites to talk about the tough psychosocial issues that caregivers face in caring for patients. And essentially, they are hour-long sessions. As I said, a large group of all kinds of caregivers, from doctors and nurses and social workers to radiology techs and orderlies, etc., and they all focus on a specific topic that's generated by the hospital itself, and the topics could range from: How do you take care of a colleague who is dying? How to you take care of a patient who is very different from you culturally? How do you take care of that difficult patient? How do you deliver bad news when somebody doesn't want to hear it? So it's the range of issues that caregivers deal with day to day. They are very, very powerful. They are incredibly moving. And as I said, they are in 150 sites at this point, and we have plans to really expand them across the country.

That's our main program, but we also have a number of other programs. We have a program at two hospitals that teaches clinicians in the art of spiritual care. We have a program at a few sites that bring patients and families together with their caregivers to talk about that patient experience, and based on that patient experience the caregivers will make a number of changes in those sites.

Judy:

Caregivers – you mean the doctors and nurses or the family members?

Ms. Rosen:

Clinical. No, they are all clinical caregivers.

Judy:

Okay.

Ms. Rosen:

And then based on the input that the families and the patients give, the clinical caregivers will make a number of changes, and then we will go back and we will measure to see whether or not that program works.

We also do funding. We fund organizations in the area of cultural competency, spirituality, communication skills and end of life. And we have this new program on CarePages called Compassionate Connections in Healthcare. We have a blog that talks about compassionate healthcare, and it's really a patient and a clinician narrative program where patients can write in about their clinicians, clinicians can write about their patients, and it's really a wonderful program, and that is right on our Web site at theschwartzcenter.org.

Judy:

And where do you get your money?

Ms. Rosen:

We are completely philanthropically funded. We started with a very, very small endowment, originally from Ken Schwartz, but we rely on donations, so individual donations. We apply to foundations and corporations and just a number of individuals. Our total budget is about $2 million, but it's growing. And as I said, we are completely reliant on philanthropy, but in turn we go out and we fund these programs that I mentioned.

Judy:

Well, is there any data to show that more compassionate caregiving results in better outcomes for the patients – better survival or happier survival, or anything like that?

Ms. Rosen:

Well, sure. There is actually, again on our Web site, a growing body of research that demonstrates that a strong relationship between a caregiver and a patient will result in improved healthcare outcomes, improved adherence to treatment regimens like pharmaceuticals, decreased levels of pain, a decreased incidence of medical malpractice – because there is a lot of research that shows that even if there is a medical mistake, patients do not sue clinical caregivers that they have a good relationship with.

So there is a lot of great evidence to support that a strong relationship is what's needed. And I think that we all expect the best treatment and technology. What we really want is to be treated with empathy, to be treated as a human being, to be listened to, to be cared for.

Judy:

I think that's completely true. A number of years ago the Schwartz Center gave a grant to train third year medical students to communicate better and more compassionately with patients. Dr. Beth Lown, I hope you can remember that you let me sit in on one of these sessions with you at Mount Auburn Hospital in Cambridge. Tell us whether you think compassionate communication can really be taught, or are there some docs who may be great intellectually but just really can't do the emotional part?

Dr. Lown:

Well, it's a good question, Judy. My own feeling about this is I think the question to be asked is how can we prevent the compassion that our students feel when they come to us in medical schools and in nursing schools and other health professional schools, how can we prevent that compassion from being worn away by the rigors of professional training and the milieu in current hospital environments. So I have been teaching medical students for 15 years, and these first year students come just filled, really, with the passion to be of service, to help, to care, to cure, to heal, and I think truly it's a minority of people who choose this field who really don't have that sort of burning sense within them. The profession is hard, and it's a calling. It's not, you know, a set of technical skills, although it includes that as well, but that's not all that it's all about.

Judy:

And it's certainly not the road to riches that it used to be.

Dr. Lown:

No. That's true too. Especially with the cognitive disciplines.

Judy:

Yeah.

Dr. Lown:

So I think people come to us with that inside them, and then something happens. That happens within the culture of medicine. That happens especially because a lot of training that happens, I think, in these hospitals tends sometimes to wear that away. But I do think it can be taught, and there are lots of ways that we try to teach compassion, caring, humanistic attitudes and excellent communication.

Judy:

Well, you know, for years – I think you knew this – I was a consultant at one of the major Harvard teaching hospitals in Boston. And I sat in on a lot of those didactic sessions, where the medical students would kind of present the case and then the senior doc would help them analyze what was wrong with the person. And towards the end of each of these little mini presentations, then the medical student would get to what they called the psychosocial part and say a little bit about the patient's life, you know, whether they were single or married, had kids or not, were working or not. And I just kept wondering why you couldn't start with that, make the person a person to start with, and then get into what was wrong with their biochemistry. But it seemed to me that that was really an afterthought. Wouldn't that help to start with the fact that this patient is a real person?

Dr. Lown:

I couldn't agree with you more.

Judy:

I'm preaching to the choir here.

Dr. Lown:

You are going to join our revolution here, Judy.

Judy:

I would be happy to. Send me to the barricades. Well, I have heard of something called standardized patients. How do you use standardized patients to teach doctors this compassionate communication? Are they people who just do role playing with a medical student or an intern, or how does it work?

Dr. Lown:

Well, standardized patients have been around for a long time, actually, and they are now used as part of the licensure process for medical students. So they are people, lay people. They are not actors. They are not even necessarily patients, but they are trained in a role. They are given a chief complaint, a history of this current illness that they are going to describe. They are often given a family history and a past medical history and a few things that might be going wrong with other kinds of bodily systems and functions. And they are trained to portray this role with a student. The student's job, depending on where they are at in their career, they have certain tasks that they have to do. They do have to establish rapport.

Judy:

Rapport is judged by whom?

Dr. Lown:

Well, that's another good question. It's a fabulous question. You ask great questions.

Judy:

Thank you.

Dr. Lown:

So in the standardized patient exercises that are required for licensure – just as an aside, the United States Medical Licensing Examination has to be passed by medical students in this country, and there are three portions to that: step one, step two, step three. And step two – a few years ago, the standardized patients examination was added to this requirement for licensure.

The standardized patients are the ones who judge and assess and evaluate these students' skills in this national examination. But it's done differently in other places. Standardized patients are also trained to provide feedback. Often they are trained to evaluate communication using standardized assessment instruments, and then they are trained to provide feedback based on how well a student does or doesn't perform the skills that are included in that instrument. So that's usually how that happens. It's used much more on the undergraduate level.

Judy:

You mean in medical school?

Dr. Lown:

Yeah, exactly. You know, there is quite a push in terms of helping people really become more proficient in interpersonal skills, in professionalism. So in the undergraduate level now we have this licensing requirement. On the postgraduate training level – so after four years of medical school – then you have to go do a residency in some field, and in that phase now the Accreditation Council for Graduate Medical Education is requiring the residency training programs to document that residents graduating from their postgraduate training programs are competent in six different domains, and one of them is professionalism, however that is defined. It does include things like respect, altruism, putting the patient's need above and before your own and interpersonal communication skills.

So now, on two important levels of medical training, people are starting to understand that this is an important component of the profession. You can't just all be about medical knowledge and technical skill.

Judy:

So if a standardized patient, in his or her report on the doctor or the doctor in training, if they say, Well, this person never made eye contact in the 15 minutes I spoke with him or her, that would count?

Dr. Lown:

Absolutely.

Judy:

Well, that's good to hear. Do medical students really learn this, or as you sort of hinted, by the third year are they so wrapped up in getting the diagnosis and treatment plans right that worrying about the emotional stuff gets really left behind? I know what you mean when you say everybody comes in idealistic and touchy feely and then it gets kind of beaten out of them, more or less.

Dr. Lown:

Well, yeah, to some extent, I think. You know, you watch students. They go through certain developmental phases. You know how when you are trying really hard to learn a new skill, it's hard to focus on anything else? Like when you are learning how to ride a bike, you are not really thinking about the book you just read at home or something like that. You have to kind of focus on the things that are grabbing your attention that require mastery, one thing at a time sometimes. So that does happen. There is an unbelievable amount of knowledge and clinical skill and input in pathophysiology and pharmacology. There is just so much stuff that people have to master in the third year, and it's quite astounding.

So some of it is just developmental focus, but I think that if we give students the opportunity to actually share some of their own experiences and their own emotions that they are having in response to taking care of really sick patients, of sitting with a dying patient, you know, of watching somebody go through chemotherapy that's so arduous that you just can't imagine how they are doing it. You will see this is very, very traumatic, this kind of experience.

Judy:

For the doctors.

Dr. Lown:

For the students.

Judy:

For the students, yeah.

Dr. Lown:

And for the residents.

Ms. Rosen:

And for the practicing clinicians.

Dr. Lown:

Yeah. We just are not always prepared for the kind of suffering that we are called upon to witness.

Judy:

Oh, I can vouch for that. My husband died of prostate cancer a year and a half ago, and his oncologist got less and less friendly the sicker my husband got. You know, it was very clear that he had trouble dealing with it. Once his intellectual knowledge had not saved the day, he either lost interest or couldn't deal with it. It was very striking.

Ms. Rosen:

And that must have been very difficult for you, for you and for your husband.

Judy:

Oh, of course.

Ms. Rosen:

Because really, what you needed was for him to be there for you, not just to give you the treatment, but to be there, to be able to discuss these difficult issues.

Judy:

Exactly. And I'm convinced that doctors often don't know what's really going on emotionally with their patients. I referred to this consultancy thing that I had at one of the Harvard teaching hospitals in Boston a few years ago, and, I mean, I didn't have a real job, but I kind of floated around and followed the doctors. And I remember one patient who was in a wheelchair, and she was kind of heavy and depressed and miserable, and the doctors wanted to put in a feeding tube, and every time they mentioned it, she sort of got hysterical, and they just considered her like a really resistant patient.

And then after they left, I sat and talked with her for a while – and she didn't have to talk to me, obviously. I had no power. But she told me that she had had two friends who had anorexia, and they had feeding tubes put in, and they both died. And she was petrified of a feeding tube, and every time the doctors mentioned it she would call her father sobbing on the phone. And I finally said to the doctors, "Do you know what her emotional reaction is every time you say this?" And they had no idea. And it really only took about five minutes to uncover that, you know, what was going on with her emotionally. I thought, Why can't they do it? You know, it's not my job. It's right there. It was not even really below the surface. Why is it so hard for doctors to take the time to just, as you said before, sit down and ask what's really going on?

Beth, do you have an answer?

Dr. Lown:

I wish I did. Judy, I am really sorry to hear about your husband, actually.

Judy:

Oh, thank you. Thank you. Yes. We haven't talked in a while.

Dr. Lown:

Yes.

Judy:

Well, Julie, do you have a thought about, you know, why it's so hard for doctors or nurses to sit down and sort of find out why someone would be so petrified of a feeding tube, or whatever else is going on?

Ms. Rosen:

Well, you know, clinicians go into the practice of medicine because they want to help people, and it's a tough system. Healthcare has become much more of a business. There is enormous pressure to contain costs. The treatments and the medical options are exploding. It's hard for clinicians to keep up with the latest medical advances. And the other factor is that patients and families are much more well-informed than they used to be. And I think all of those forces converge, and it's difficult, and frankly, clinicians don't have the emotional support that they need to be able to respond emotionally. And that's part of what the Schwartz Center provides, is that we kind of provide that safe place in those venues for the clinicians to talk about it.

But there really isn't an excuse other than it's a tough system. I have heard a lot of clinicians complain about the economic pressures, the business pressures, just everything that they have to keep up with, and they try to compartmentalize. And I guess that would be my feeling. It can be more of a system problem than a specific clinician problem.

But, Beth, do you have any thoughts about this?

Dr. Lown:

Well, I think that I agree with you, Julie. I think it's really complicated. I mean, in a way it begins with the whole mind body dichotomy, you know – that somehow, somewhere along the line we get taught that the mind and the heart are two separate things, and we get trained to focus on the body and on the disease process. And I think very early on in this country the focus became on research, innovation, technological cure – instead of paying attention to what preserves and promotes health.

Judy:

Well, I mean, to take doctors' side for a second, you know, if you had to choose between somebody who is going to fix you and someone who is going to hold your hand, I think everybody would choose being fixed.

Dr. Lown:

Right. But what happens when there is no fix, you see?

Judy:

Right.

Dr. Lown:

Then you need doctors who know how to 'be with,' instead of how to 'do to.'

Judy:

Right. I think that's true.

Well, again, Dr. Beth Lown, how do you train medical students in giving, bad news?

Dr. Lown:

There are lots of different ways that we do this. Relatively early, usually around the third year at least in our medical school, we do exercises around breaking bad news. So there are actually standardized patient exercises that we have at the medical school in our patient doctor's course in the third year, where the students will interact with one of the standardized patients, and they have to give bad news, and they are given feedback by the standardized patients about how that went. We do teach models. There are some communication models about breaking bad news that we use.

Judy:

Well, is there a secret to breaking bad news well?

Dr. Lown:

Well, I don't think it's a secret, but I think there are some things to keep in mind. Do you want me to share those with you?

Judy:

Yeah, please.

Dr. Lown:

Well, I mean, I think first of all you have to know your stuff. You have to do your homework. You have to really make sure you understand exactly what the patient's clinical situation is, what the options are, what the prognosis is. You really just need to get all of your facts, your clinical material kind of very clear in your mind, do your homework, talk to your clinician and so forth. But then you need to have set aside some time. You need to have some protected time to have these kinds of conversations. This is not the kind of thing where you leave your cell phone on, or your – you know, if it's possible, you sign out your pager. You find someplace quiet to sit. You invite the patient to come, to invite somebody. If there is news to be shared, you want to make sure that if they want, they bring someone with them, an extra pair of ears, a hand to write some notes down, because most people can hardly remember what's said in difficult conversations like that.

Judy:

Right.

Dr. Lown:

And you don't sit behind a gigantic, looming desk. You sit close enough …

Judy:

… next to the patient.

Dr. Lown:

… so that if the patient needs a touch, needs a tissue, you can be there to provide it. So you have to really think in advance about the facts that you need, and you have to set up the environment in a way that is conducive to having this kind of a conversation.

And they teach this model where, you know, we really want to begin by hearing what the patient's understanding is of their situation. So rather than just jumping into the conversation, which, you know, often I hear that. I have to listen to thousands of video and audio taped conversations in my role as an educator. Often people will jump into the conversations from where they think is important, with what they think the patient needs to know, rather than starting by trying to understand where this patient is at. What do they understand about what's happened so far? How are they understanding the process of their illness? What do they think should be done? So, you really start first by listening to the patient's perception.

And then you go on from there to share little, tiny bits of information at a time, and then check in: How are you hearing this? What's your reaction to this?

Judy:

Yeah.

Dr. Lown:

I think we tend to overload people.

Judy:

Yes. I think that's probably true, and people – it's very hard to take in that really bad information.

We have a long but interesting e mail from Sonny in Wyoming. I'll read it to both of you, and you can answer in a minute. Sonny writes, "I was wondering, is there a way that bedside manners can be enforced inside a medical system? My husband, while going through a terrible round of surgeries, was seen by a surgeon who refused to acknowledge my presence in the room and looked at me like I was interfering when I volunteered information about my husband's recent stay in another hospital. While the nurses assured me that he was a great surgeon, I am appalled at his lack of social skills. While I realize this man's value as a surgeon, I think he underestimates that value – or undermines that value – by being a jerk most of the time. Again, with appreciation for his skill, I shudder to think of the healing that is dampened by the stress accompanying his visit to the patient. I also think that his demeanor lessens the level of professionalism that ought to be expected from educated professionals working with very sick people.

"So my question to you is what can be done for someone whose skills are high in demand and yet fails to recognize a need for diplomacy, compassion and a willingness to let some things go?"

Julie Rosen, you want to take the first stab at that?

Ms. Rosen:

Wow. First of all, I empathize with the woman that asked that question because we hear a lot of examples of very, very skilled, talented clinicians with no bedside manner.

Judy:

Yes. I have certainly encountered them myself. We all have.

Ms. Rosen:

So I think the way that I interpret the question is: Is there anything that we can do to enforce that as a medical system? And I am not sure about that. I guess there are a couple of answers to that question. Right now, I think that one thing that clinicians are incented by and that hospitals are incented by are payments, and many insurance companies are really tying payments to quality and to patient satisfaction scores.

Judy:

Is that really true? They don't just pay according to the services rendered?

Ms. Rosen:

Well, they are paying according to the services rendered, but payment is really shifting. The way that clinicians and hospitals are paid is really shifting more to quality measures. And part of quality measures is the way that patients perceive, you know, their clinicians due. And so, I mean, this is more of a long term issue than a short term issue because certainly right now clinicians are primarily paid for services rendered. But, you know, in the long term, if that clinician's satisfaction scores are lower, they might not be compensated where they think they ought to be compensated.

Having said that, what talks is money, and so there is that. If a clinician gets sued because they have poor communication skills, obviously that's something that would make them stop and think. But right now, from a medical system perspective – and I would have to check with Dr. Lown on this – I don't think that there is anything that can really enforce good bedside manner. The way that we approach it at the Schwartz Center is more with a carrot than a stick. We give clinicians those opportunities to be emotionally reinforced, but there really is no way, I don't think, of enforcing great bedside manner.

Judy:

No. And I can imagine perhaps for surgeons in particular, you know, there might not even be a carrot that would be all that motivating. For all they think, they may think they have a great bedside manner. You know, it would take a certain humility to wonder about that.

Dr. Beth Lown, what do you think? I mean, this person who e mailed is asking, What can we do about this really socially appalling guy? I assume it was a guy.

Dr. Lown:

Yeah. It's really, really hard. And I agree with Julie. I am not sure – at this point at least – that we have any enforcement around professionalism and communication skills. They will be eventually paid for performance in this domain as well as in quality domains. This is going to be considered part of the quality dashboard, so to speak, so I think that perhaps that will incent some people.

Judy:

Well, you kind of lost me in the bureaucratic talk. I mean, what is this dashboard? How does the patient know that there is a dashboard?

Dr. Lown:

They may or they may not, but they are given patient satisfaction instruments, and increasingly there will be dissemination of patient satisfaction questionnaires, and some of those are directed at professionalism and communication.

Judy:

So it's not just about the bad food and the bad parking?

Dr. Lown:

Right, exactly. And those scores will become public, and hospitals are going to want to score well on communication and interpersonal relationships. They are not going to want to see poor scores in the public view.

Ms. Rosen:

In Massachusetts, those scores actually are already public. A lot of these scores are already public, at least in Massachusetts. I can't really speak for the rest of the country. I know that the Center for Medicare and Medicaid is looking at transparency, and transparency is really patients being able to look at how a clinician, how a hospital does on performance measures, and be able to really look at that and compare those scores. And, I'm sorry, I don't know if the rest of the states have this, but certainly in Massachusetts there is the Massachusetts Health Quality Partnership that actually displays these scores.

Judy:

I can imagine it's kind of a quagmire because, you know, it could be fairly subjective whether you as the patient think the doctor is really nice or not. Maybe doctors should have comment cards or a phone number you can call to give them compliments or complaints or something. I would probably fail before I got off the ground.

We do have another e mail from Nancy in Redmond, Washington. She writes, "Finding a network of supportive doctors is critically important to me. I have rheumatoid arthritis and lesions on my brain stem. I have had many disappointments and sorrows with many providers. Why do so many doctors treat patients with such a demeaning behavior when we are at our most vulnerable stage in life?

Dr. Lown, Beth Lown?

Dr. Lown:

What's the first part of her question? Having to do with finding support?

Judy:

Well, how to find a network of supportive doctors.

Dr. Lown:

Supportive doctors.

Judy:

Yeah. I think that – let's assume she has patient support or family support but she is not finding a whole lot of luck getting supportive doctors.

Dr. Lown:

Well, one thing I have learned from patient advocates is that you can learn a lot from patients who have the same illness that you have. They are often a really great source of information about where to find doctors who have the kind of caring that you really want. So I think first you turn to like minded souls in your own community to try to find out who has been helpful.

Judy:

So essentially, you go to a support group of other people with your same disease and then ask them for referrals to doctors.

Dr. Lown:

Well, I think that's certainly one way, and in fact most patients find you that way.

Judy:

Interesting. That would probably put some doctors out of business, but maybe that's not such a terrible thing.

Well, Julie Rosen, I know that you have written that the essence of compassionate care is respect for patients. What does that really include?

Ms. Rosen:

Well, I think a lot of the elements that I talked about earlier, of what makes a caregiver compassionate, but let me just emphasize a couple of them. Again, great listening skills, communication, interpersonal skills, certainly a sensitivity to cultural and spiritual differences. We haven't talked about that, but that's really important in the area of respect. Helping the patient and the family to understand what their situation is and enhancing the quality of life, you know, really being able to understand the patient's medical and emotional needs. What Ken Schwartz says in his article is, "Don't just take care of my body. Take care of my soul." And I think that's a nice way of depicting really what respect and empathy and compassion boils down to.

Judy:

So we need a form on the reimbursements thing that says, you know, the doctor took care of my soul as well as my body. I think you are right saying unless we start paying for this, we are not going to get it. If doctors are only paid to cut and hand out drugs rather than listen, we are never going to get the listening. That may be a harsh attitude, but I am sort of coming to that conclusion.

Obviously everybody does want compassionate care, but I've talked to a number of doctors who when they themselves have become patients have not been able to get the kind of compassionate care they want. Why is this, Dr. Beth Lown? Why can't even doctors get what they need when they are patients?

Dr. Lown:

Well, you know, when doctors are patients, they are no different from any other patient. Their needs are no different. Actually, I think doctors frequently gets worse care than other people.

Judy:

Why is that?

Dr. Lown:

Well, I think a bunch of things happen. First of all, doctors sometimes get more tests because people are more nervous. They don't want to make a mistake. And the more diagnostic testing that happens, sometimes the more confusing situations become. The more aggressive, the more intensive the kind of diagnostic testing is, the more there is a chance for more complications and so forth.

The other thing that can happen is that the provider can assume that you know everything and that you can make the decisions because you are a physician. And they forget that when somebody is sick, they want somebody to take care of them just like anybody else.

Judy:

Plus they went to medical school 40 years ago or whatever. Things have changed.

Dr. Lown:

Yeah. And I think sometimes either too much gets done or too little gets done, and the physician is put in a sort of position of having to make their own decisions, trying to find their own information. People assume that they know information that they may or may not know. I remember after I gave birth to my first child, I was basically left alone in a room with this crying little person while I knew nothing about what to do, because the nurses just figured, Oh, she's a doctor. She will know what to do. She'll take care of things on her own. And that was so far from the case. I was totally beside myself with this squealing, delicious little baby.

Judy:

Well, are doctors worse patients than the rest of us because they do know something but maybe not enough? Or are they better patients?

Dr. Lown:

Oh, it so depends on the individual, you know, and it's very hard. I think it's tough because you often can see the road ahead that others perhaps might not, and it can definitely intensify anxiety, depression and the like.

Judy:

Yeah. You don't always want to know what's ahead.

Ms. Rosen:

We have actually done some interesting work around clinicians as patients.

Judy:

Oh, tell me.

Ms. Rosen:

And actually, every year we have an annual dinner, and our video last year focused on three clinicians that became patients, and actually they were all cancer patients, and it's very moving. We have also actually conducted some speaker series on this issue and sometimes, sometimes clinicians really change when they become patients and when they really see things from the other side. And maybe those are the people that we are really trying to get to. But we had one particular speaker series last year with a physician who will go unnamed, who is very prominent in our area, and I think he was just stunned when he – as somebody who had been practicing many years – when he was on what we call "the other side of the johnny."

Judy:

The receiving end. Right.

Ms. Rosen:

It really changed the way that he thought about his own mortality and how he, you know, he is now practicing again, but it was really an eye opening experience. And we have done a lot of work on this, and also we have got some information about that in our bibliography.

Judy:

Oh, that's interesting. I would love to see those videos. It would be very interesting.

Ms. Rosen:

Well, you can just go onto our Web site.

Judy:

Okay. I will.

But it's more than just – you know, it's not just a question of having billable hours and being able to bill for services as opposed to listening. It's sort of the culture of medicine, especially in hospitals, that works against compassionate care, don't you think? And it shouldn't take the doctor, him or herself becoming a patient with a serious illness, to learn about what the other side is like. I mean, what's wrong with the way we are training doctors, that it's only 30 years later when they get sick themselves that they kind of get it?

Beth Lown, do you have any thoughts on that?

Dr. Lown:

Well, I think it's not just about what's wrong with doctors. I think it's what's wrong with the system.

Judy:

Okay.

Dr. Lown:

I do think that if healthcare – I think healthcare is treated as a commodity in this country.

Judy:

Yeah.

Dr. Lown:

And if that is the case then it's going to be run and driven by market forces like any other commodity, and then what's going to happen is that people who are caught up in that system are going to be driven by the factors that drive such a system. So I understand the need to educate and to help clinicians and providers – not just physicians and nurses, everybody who is involved in the care of patients – to help them retain their innate compassion, but I think we need to pay attention to the systems that we all live in that drive us in different directions, that drive us toward providing billable care, that drive us towards technology, towards getting a scan instead of listening to the patient or examining the patient, laying on of hands. I don't want to have everybody leave just thinking that there is something wrong with physicians and with healthcare professionals.

Judy:

I think you are completely right, and I am glad you said that. My experience in this teaching hospital was exactly that, that the hospital was full of these great doctors and great nurses, and they were all kind of caught up in the system that rewarded the wrong things and put pressure in the wrong places. I think you are completely right.

Julie Rosen, in your blog on healthtalk.com you talk about some specific compassionate caregivers. Can you pick one or two and tell us about them and what makes them stand out in your mind as examples?

Ms. Rosen:

Sure. There are so many great examples of compassionate caregivers, and every year we have an annual – essentially an award for the most compassionate caregiver of the year in Massachusetts. We just do this in Massachusetts. And I think we are stunned every year when we read these applications, and we just cry over every single application, that there are so many wonderful clinicians, whether they are nurses, social workers, you know, allied healthcare professionals, physicians, kind of the whole range. But I will mention a couple.

A couple of years ago, our awardee was a woman named Helen Mullen who was a pediatric oncology nurse at UMass Memorial in Worcester. And there are just a number of examples, but she was taking care of a dying young girl, and this girl really wanted to go Christmas shopping with her family. So she arranged for a trip to Wal Mart. And, you know, they cleared out the store, and she kind of broke all the rules, and she took the patient with her and they went Christmas shopping. And the patient died on Christmas, on Christmas Day.

Judy:

Oh, gosh.

Ms. Rosen:

So there are just a number of these examples, and they are not all end of life examples. But the clinician that really takes the time, that goes the extra mile with that patient, that goes the extra mile with that family, that's available to them day and night no matter whether they're off shift or on shift, they give them their cell phones. They're available for them all the time because that's really what patients need.

Judy:

It is. And again, to go back to my little experience at this teaching hospital, I said to one of the attending doctors, one of the senior doctors, Why don't you give your phone number to patients? And he said, But then they will call. You know, and I'm not sure they would always. My guess is that most patients would not call unless it was a really dire emergency, that most people would not abuse that privilege.

Beth, do you have a comment on that?

Dr. Lown:

No, I agree with that. During the height of my practice days I was on call 24 7, and I felt that people called me when they really needed to, and they try to respect – sometimes I was angry with people for not calling me when they were so sick, but for the most part they are extremely, extremely respectful.

Judy:

Yeah. And obviously, compassionate care is necessary at all points in life and in illness, but, Julie, as you were saying, it's especially important at the end of life. Can you address this, Beth Lown? I mean, obviously, when a person is dying that's an especially critical time. Can regular doctors make themselves more available than they usually are at this juncture?

Dr. Lown:

To be honest, I think the people that I have seen, that I have worked with, colleagues, we all do that. We go and try to sit at the bedside. Actually, in my experience, this has been the most rewarding, the most fulfilling, and richest place to be when you are a practicing physician, because there comes a time when there really aren't any curative treatments. There is no drip. There is no medicine. There is no other thing to do to somebody. And actually you reach a point, which is hard, but it's the time where you really get to sit and listen to people tell you about their lives, about what's special, about what have been the most joyful experiences of their life – what's the legacy they want to leave behind? What do they want people to remember about them? It's just a wonderful time to be with people as they celebrate their life at the end of their life. And I think, you know, people who have the privilege of experiencing that with other human beings, it's a gift.

Judy:

It is. It absolutely is. I've done a fair amount with hospice care, and it really is. The hospice nurses that I have met over the years are probably the most cheerful group of people I have ever met, and I think it's because their work is so rewarding.

Dr. Lown:

That is true.

Judy:

Most of our listeners have chronic illnesses. What about compassionate care for people with chronic illnesses? It must be hard at times for doctors to wrestle with the same disease or disability year after year after year.

Beth Lown, what would you say about that? And then Julie, I would like you to comment too.

Ms. Rosen:

Sure.

Dr. Lown:

Well, that's the nature of primary care, isn't it? I mean, that's what we signed up to do. We are lucky enough to live in an age where people can live for long periods of time with diseases that used to be fatal at earlier stages of life. So in a way we have been given this gift of extended life. And again, it's very similar – I mean, patients with chronic conditions, you do need to always try to understand the patient's experience with that illness, where they are at, how it's affecting them, if it's affecting them, what are the barriers to trying to preserve their own health, trying to help them achieve what it is they want for themselves in terms of their own health and wellness. So, you know, that's just the nature of the work. It's the nature of what we do.

Judy:

That makes sense. Julie?

Ms. Rosen:

I guess just to add to what Dr. Lown said, I think that compassionate care is probably ultra important for people with chronic illness because, you know, they have to deal with this day in and day out, year after year. And so a great relationship with their clinician is absolutely essential. I guess our message to someone who is dealing with some kind of a chronic disease who is not getting that kind of care – beyond trying to change that nature with their clinician, I would urge them to think about finding somebody who can be communicative both with that patient and the family so that they can have their needs met, because it's so important with people with chronic illness.

Judy:

Is there anything special that the patient or the family can do to enhance that? Does sending your doctor an e mail help or hinder? Or how can you get that without unduly impinging on the doctor's time?

Ms. Rosen:

Without going tonight to clicking onto our e mail, we actually have, on our Web site, a section for patients about the rights that you have as patients, some of the questions that you should ask doctors, some of the things that you should go in prepared to do. And I would urge people to take a look at that on our Web site.

Judy:

Why don't you rattle off that Web site one more time?

Ms. Rosen:

Sure. It's called theschwartzcenter.org.

Judy:

Great. And, Julie, I wanted to get you to talk about an example of compassionate caregiving that was spearheaded by a young patient's loved one. In your blog on healthtalk.com you talk a little bit about a woman named Deborah Dokken. Tell us a little bit about her and what her daughter Abigail did.

Ms. Rosen:

Well, Deborah Dokken is a woman who had an unfortunate experience. Her daughter died very young, and she was being treated for cancer.

Judy:

The daughter?

Ms. Rosen:

The daughter was being treated, the daughter I believe was being treated for cancer. I believe so. Sorry about that.

Judy:

That's okay.

Ms. Rosen:

But she did die, and Deborah really took it on herself to establish this initiative for pediatric palliative care that really focuses on improving family centered care for children living with life threatening conditions. And her message to parents is you really have to advocate for what you need or want. You need to be able to advocate for how you get the information, how you care for yourself or your loved one, and, you know, that you should join an advocacy group, that you should work with other families, that you should really make institutional change.

And there is a whole movement across the country that focuses on patient centered care, and she is really an important part of it. She is the kind of example that we like to highlight from a patient perspective, somebody that's really doing something to better the situation that she unfortunately had to go through.

Judy:

Okay. So you are basically saying that patients themselves can kind of become or lead a cause celebre for the kind of care that they either felt they did get or they didn't get and want other patients to get.

Ms. Rosen:

Absolutely. And she is a lot like Ken Schwartz. Ken Schwartz talked about how you have got to rewrite the rule book, and how we really have to focus on these things that are so important. And Deborah is just a great example of that.

Judy:

Well, I think you are absolutely right.

We are almost out of time. Dr. Beth Lown, who is an assistant professor of medicine at Harvard Medical School and an internist at Mount Auburn Hospital in Cambridge, Massachusetts, any final thoughts you would like to leave us with tonight?

Dr. Lown:

I actually was just going to build on what Julie had just said, because there actually is evidence in the research literature that the more activated a patient or family is, even in a given encounter, physicians tend to respond in kind. And so a patient participating makes the physician more facilitative during dialogue. But there is something about mutual influence in the encounter that is definitely well-documented in the research literature on communication and healthcare.

Judy:

So the take home lesson is what? How do you influence your doctor to be more compassionate and attentive?

Dr. Lown:

Well, I think if you are so inclined – and not everybody wants to participate as actively as others, it's really a personal preference – but if you are of a mind to be active in conversations with a clinician, you can if you like, a lot of patients will bring in information that they have got from other sources, and that's often – actually it can be sometimes met with resistance on the part of the physician – but often if you are clear about what your goals are and how you are experiencing your health or your illness and you have a chance to really give it some thought ahead of time, take some notes, write some things down, write down questions, prepare yourself, write down what your medications are, bring them in with you.

Judy:

Beth Lown, I am going to have to cut you off. I would love to let you go on all day, but I want to get a final comment from Julie Rosen.

Dr. Lown:

Sure.

Judy:

Julie, any final thoughts you would like to leave us with tonight for how patients can elicit more compassionate care? Real quick.

Ms. Rosen:

Okay. I agree with everything that Dr. Lown said, but I think it's the little things that make the difference for patients. It's a clinician that listens actively, that respects, that is eye-to-eye, there is a lot of eye contact, active listening, touching their shoulder. It's the little things.

Judy:

Okay.

You have been great. I would like to thank both of my guests. And I would like to thank you, the listeners, for joining us. Until next week, I am Judy Foreman. Good night.